Tuesday, July 7, 2015

Informative message from EP dr (regarding EP Study/Med)

I don't typically make it a point to share emails/messages I receive from my Providers but on occasion there are ones that I feel the information could benefit the greater MPS Community or others I know or perhaps even other HCP's who may be reading this blog.
This is an email received from my EP (Heart Rhythm) dr. regarding the EP Study and Heart med. - Informative to me.
He has been really great at answering questions of mine that have come over over the past 3 or so wks since I first met him and he brought up doing the EP/Heart Rhythm study and ablation. As I think I may have wrote about in another recent blog post, even though I've only met him and his NP once I feel like this is another score for my 'good' Providers Team. =) Below his email see other info.

Note from Dr.K.
Good evening, Erica:
These were all things I was planning on discussing with you when you came in for the EP study, but we can go ahead and start discussing them now.
If we do identify an arrhythmia that is amenable to ablation and are successfully able to get rid of it, then this will hopefully improve your symptoms. Granted your mitral valve is still a problem, so I cannot say that you will suddenly feel perfect. However this may help some of the shortness of breath and other symptoms that you experience.
If we don't identify an arrhythmia during the study, then I would say your own intrinsic pacemaker is running fast as a response to the extra work it does related to your mitral valve. Then we have to discuss what makes sense between you, me, and Dr. Earing. Ivabradine has been used primarily for treatment of heart failure in people who have bad heart function. The largest study was called the SHIFT trial, but that study specifically excluded patients who had valvular abnormalities. There have not been any big studies in patients with your particular mitral valve issues, though some smaller studies have suggested there may be some benefit. The medication does not help the valve per se, it just lowers your heart rate, which might in turn help your heart better tolerate the extra work it has to do because of the valve, and therefore help you feel better.
Once we have access to the medication, then it typically takes a week to get the heart rate down, then it's a matter of waiting for a month or two to see what effect that may have on your symptoms. If this is the route we go, and the medication does help, I would anticipate that you would likely have to be on it as long as your mitral valve is not working well. Once your valve is replaced, then we can try to come off the medication and see how you do.
I believe I hit all of your questions. Please let me know if there is something I missed, or you would like me to expand upon.
Take care,
-JK

About the EP Study - Ablation (uses Radiofrequency)
Transcatheter Radiofrequency ablation via Cardiac Cath - Electrophysiology Study to map out potential arrhythmia and suspected ectopic (early/extra) atrial rhythms or abnormal extra beats that occur in/start in certain area of the heart.
This approach is being done due to failed drug therapy (several beta blockers, current high dose calcium channel blocker as well as current high dose Digoxin which have been unsuccessful in controlling the to fast heart rhythm.
Due to this we've been unable to bring down heart rate with these meds which puts an un-due strain on the heart when there is already a strain from the severe Mitral valve leaking and narrowing. In addition to the plain to fast rhythm (tachycardia) there was/is the suspected 'EATs' rhythm on both the initial EKG at Dr.Kovach's appt and abnormal features on the 24hr Holter monitor done at that appt and read by him after, prior to his scheduling this study (he had waited so he could have a better idea if he needed to have "a 2nd pair of hands for the EP Study and Ablation" or otherwise it would have been scheduled with just him doing it.
As is he scheduled it with 1 of the other EP drs.
Because of the Holter monitor results and suspicion of the ectopic/early atrial arrhythmia the EP Heart rhythm study will be done under conscious sedation (basically awake but comfortable) and the areas where they insert the 2 or 3 catheters to gain access to thread up to the heart will be numbed to.
Apparently many people have EP Studies when there is strong suspicion of an ablation being done under general anesthetic but in all honestly even though we have an Anesthesiologist who is familiar with my airway (as mentioned in prior posts she did both the prior OHS's 2yrs ago, 22monthts ago and the TEE after the 1st OHS when it was realized there was a problem w the new valve and newly reconstructed area.) I am glad we are just doing mild sedation, makes it all easier in a way albeit i'll admit I am a little nervous about laying flat so long for this study and hope I an out just enough I am not aware enough to be aware of any headache/symptoms!
Given i'll also have to lay still for 4-6hrs after I am hoping for as I probably also wrote about before that they will let me sit atleast semi-upright if I keep my legs straight..
I know w the one other EP Study I had done 11 or so years ago, actually it was just prior to switching to start following care w Dr.E at CHW I'd had an severe allergic reaction to an IV Antibiotic that was given prior to the study (I can't remember why it was even given) and so I was so snowed from the Benadryl that even though they used conscious sedation w that I had 1st had to try and do a tilt table test which I couldn't even stand up straight for due to being so zonked from the Benadryl and then once on the EP table I remember pretty much nothing between the Benadryl and sedation.
In fact after that EP Study a relatively new continuous read implantable EKG monitor was placed and I don't even remember them telling me about that after the EP though I am sure the dr. did. If lucky I wont really remember this study either though I know the plan is to use very light sedation to have the best chance of locating the ectopic atrial arrhythmia (which apparently "goes to sleep" as the body sleeps as was evidenced according to Dr.Kovach by my 24hr Holter recording.
Stress dose steroid wise for this procedure and sedation the same steroid dosing is used as when giving general anesthetics where airway intubation is done and the Anesthesiologist is familiar w all that.
I am just patiently, impatiently waiting for this to be done so I can get clearance to move ahead to changing the shunt valve.. Granted as I've also written about w that the stiffness in mid-shoulders/neck is still there intermittently and it seems now the sensation I got when Dr.Bragg was draining the glorious CSF a few wks ago (glorious in that I got relief but the nerve almost pulling sensation that occurred during is occurring now intermittently but actually really frequently).. perhaps as the shunt is trying to drain?
I am not sure but it doesn't discriminate if I am walking or sitting when it occurs but is a twinging, nerve like pulling that is just odd.
Kind of takes my breathe away in surprise initially as it occurs.
Actually my R hip has been bothering me, albeit this is the same 'hip pain' I was getting w my previous LP Shunt the yr. leading up to seeing Dr.Bragg and then when she did her 1st revision and did that decompression surgery, what I had always thought was hip pain (b/c there is hip joint/bone issues on imaging that could correlate) turned out completely went away. Well anyways that is now recurring but on the R side along w the very (very) low back pulling/nerve stuff.
Ahh heck, I might as well face it, my body hates me - a love, mostly hate relationship ie I try to love it and it reciprocates by hating me? =) <-- have to find humor somewhere, right?
In any case hopefully it comes soon enough we can do something w the shunt.. I don't really want to wish this time away b/c I LOOVVEEE the warmth (minus the fact the humid air is making breathing feel even worse, literally like I am trying to breathe from underwater!) but I do so want to feel a wee bit better both cardiac wise, either w the Cath study or hopefully, if it helps the new med and to on the headaches front.. hopefully that different valve would help atleast some better and not make this nerve/weird pain even worse!
In any case, thanks for stopping by,
Erica
PS: I am writing this at 5 in the morning b/c I can't sleep and my obnoxious neighbor above me seems to be having a good ole' time tonight doing god only knows what. Sleep is for the birds?

Sunday, July 5, 2015

EP Study info


I know I updated last wk (I think?) about the EP Study/Ablation being rescheduled due to med miscommun. and rescheduled to the 22nd.
My EP dr. emailed me the day after the Study was cancelled (so the morning the study was originally scheduled to be done) both apologizing (which was nice albeit not necessary) and gave me the med instructions re: what and when to stop the various cardiac meds that I should have been told of ahead of this past wk's scheduled EP Study and Ablation.
I also heard from the Anesthesia dr. i'd originally hoped to use (she was out of town last wk., she had messaged me and let me know as much regarding being gone but that she'd also shared her anesthetic recommendations with my Team for the sedation for last wks. originally scheduled study) and she is working the 22nd. In her messages she said she should be able to be part of the Team on my case the 22nd which is good.
In addition to Dr.Taylor it will include Dr.Kovach (my EP), a 2nd EP dr, Dr.Taylor (Anesthesia) and the others involved in the case.
1 Wk ahead of the 22nd (when the study is rescheduled for) I am to stop the Diltiazem (Calcium Channel Blocker)
5 days ahead of the 22nd i'll stop the Digoxin
The morning of i'll skip both the Lasix and the Spironolactone morning doses
I'll keep taking both the Aspirin and Coumadin doses and this last time we tested INR 2 days prior but they do not want to stop either med for the study.
In the email Dr.K also included (which I did know from my Endocrine drs. office) that they received the pre-procedure stress dose steroid dosing recommendations. The recommendations for pre-surgery stress dose steroids to include the 100mcg pre-sedation IV Solu Cortef which is to be given 1hr ahead of time (I had always thought it could be given 30mins to 1hr but according to my dr they highly recommend it be given an hour ahead of time) and then i'll wean at home.
Otherwise breathing issues in this humid weather have been pretty fierce, thankfully it is not a constant but wowza when it is an issue, it is most definitely an issue and seems so much worse lately! I check INR again Weds, at CHW prior to my ERT (enzyme) infusion so may mention the change in symptoms to Jane, Dr.E's Nurse when she calls with results. I doubt anything we'd do but worth mentioning.
I am actually a little unsure if say the EP Study they find an arrhythmia and say it could be ablated (basically gotten rid off) could that help the CHF symptoms and thus the breathing symptoms?
I know he's said it is ok but I did email this question to Dr.Kovach. I am a little curious if say they don't find an arrhythmia and then we have to start the new Heart failure med but say we ended up still having to do a mitral valve replacement at some pt. (which Dr.E seems to really feel we'll have to do sooner than later, thus a 3 OHS) are pts. able to eventually get off of the Ivabradine once say MVR is done?
In any case will update when there's anything worth updating, this week I as I mentioned above I infuse on Weds. Not a lot else going on this, wk., impatiently trying to be patient waiting to get this different shunt valve so I could HOPEFULLY sleep a little better!?!?!
Otherwise it has been a busy wknd, Fri., my Mom, Sister, Z and I went to Sun Prairie and Madison to some crafty type stores and Greenhouse. Sat we had a cookout and bonfire while getting eaten alive at my Sister's. Earlier in the day Zan and I had went out to the Horicon Marsh which is only about 5-10mins from where my Sister lives. Zan wanted to come home with me and the fireworks didn't end up starting till around 10 so we left a but earlier but did see other fireworks on our drive back to my Apt (about 20min drive), this way we beat all the crazies to.
Sun my Parents had a cookout so we all went swimming and the kids played, and good food although is always even better when one is hungrier!? =) Definitely a busy and tiring wknd, especially given sleep has not been my good friend lately!
Thanks for stopping by,
Erica